Comments – Frances Booth
Comments are posted in the language in which they were received.
Name: Dr. Frances Booth
Affiliation: University of Manitoba
Capacity: REB member
Main Discipline: Medicine (Pediatric Neurology)
Regarding Multijurisdictional Research
3.4 Process for researchers and local REBs and to follow:
Consideration of direct communication between the REB of record and the local REBs (always with a copy to the researcher) rather than having the researcher send the decision of the REB of record to each local REB and send the acknowledgements of the local REBs to the REB of record.
Under Broad Consent
6. Ongoing Broad Consent and mechanisms to accommodate a change in capacity
How will individuals with dementia or other neurological conditions making renewal of consent not possible be handled? Can donors indicate consent for future research at a time where they still retain the capacity to consent? Could consent be granted by another individual who knows the wishes of the donor?
What happens to the data or biological materials when the donor dies? Is it possible for a donor to consent to continued use in perpetuity of their materials? Is so, how would this be done?
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